Feeling defeated! :(

I don't know how you all do this....in so much pain! Awaiting rhumy appoint next week but struggling isn't even the word.

I now have diarrhea and stomach ache from naproxin so I've stopped taken it....on top of most of my major joints aching like crazy, my shoulder now is so painful and feels a bit like it keeps clicking out of place!!!! Nearly went to a&e last night it was so bad.

My family have no idea what I'm going through and won't even try to understand, I'm sure they think it's like having a cold and it will sort itself out soon!

I am at my whits end! Dunno if I cam do this :(

18 Replies

  • Oh dear, you are having a rough time at the minute. I know how you feel but as people keep telling me in time when the medication is right you will get some relief, take are of yourself in the mean time x

  • Morning Dolly. I remember only too well how I felt before starting RD meds. Painkillers & anti-inflammatories alone done touch it. Not too long now till your appointment & it will be a few weeks before whatever is prescribed then will start working for you but if your Rheumy recognises the pain you're in he'll prescribe some stronger pain meds to at least ease your symptoms pro tem.

    I know you've stopped taking naproxen, which should have helped somewhat, but were you given a ppi such as omeprazole to take with it? If not that could've been why you've tum & bum problems.

    You're in limbo at the moment & once you have a positive diagnosis & start on the meds the world will seem a brighter place. Are you taking a family member with you to your appointment? If you do it may help with understanding what you're going through & how RD affects you. My husband always attends with me & has as much knowledge as me because he has been there step by step.

  • My partner can't get time off work :(

  • Oh, so he can't juggle times for you? Anyone else close to you, if only for support?

  • No only my sis and she literally just had a baby. :(

    I'm scared that I'm gonna have a good day when I go rhumy too :(

  • Have you explained that this is more than just a hospital appointment to your partner? Does he fully appreciate how RD will affect you? Only saying this as sometimes we're our own worst enemies & don't want to worry those closest to us when really we should be honest & say it how it is. Just thinking that RD is so misunderstood & you do say they think it'll sort itself out soon & if it was bad enough last night for you to consider attending A&E you really need support & greater understanding. Maybe a look together this nras.org.uk/stories would help.

  • She* (lol) tries to understand but I don't think she has any clue how bad I'm feeling. Literally been able to get dressed today and not do anything else. I'm so tired I need a sleep everyday

  • Then I think it's time you became more assertive & if she's "trying" to understand then maybe you're not explaining how you're feeling honestly. Without help & understanding form our nearest it makes coping harder & more stressful which isn't good for RD & will only make you feel even worse than now long term, even with appropriate meds. Everything you've said regarding your closest family points to them not really having the first idea of your condition & this is why you really do need someone who's willing to attend your appointment lending support & willing to be educated in how if affects you. Your partner is obviously who I'd prefer if I was you & if he really can't take a few hours of work, maybe at your next appointment, given plenty of prior warning, he could?

  • I hope so! She said she's going to tell work she has to be off on Tues for my appointment. Been in so much pain I gave in and took codydramol which doesn't really do anything but it did send me to sleep for a few hours. My 8 year old daughter is the best....She left me alone asleep on sofa and made me a drink of juice and has been sat watching netflix...I said sorry I'm boring and not much use today and she said "you're still the best mum ever and I love being with u even if we just sat together"!!!!! Omg never felt so proud in my life :'-)

  • My reply below overlapped yours! Sleeping won't harm, it'll let your body rest. Once you're on the meds you need & give them a few weeks for your body to absorb them, the way you are now will seem like a lifetime away & you'll soon start to enjoy playing with your little girl. She seems to understand more than anyone, you're not her normal mum. Cuddle up on the sofa the two of you & have some mum & daughter time.

  • On reflection thinking this over whilst having lunch I'm maybe being bit short in my answer. You're of course new to this condition & I was speaking as I feel having had it 6 years & not thinking it's all new to you & you've a lot to take in yourself. The situation you're in is a typical example of the Arthritis banner covering all & RA being misunderstood. It's a chronic auto-immune disease & not a case of aches & pains that will go away like a cold which seems to be the understanding your family, not taking anything away from any other arthritic conditions it's just different & not always seen. This is why I use the term RD & it has opened up a whole new perspective on RA, even sceptical or dismissive extended family members now understand the condition better as I was given a chance to explain using the term.

  • You weren't short, don't worry. I do tend to agree with u! I don't have a big family network, my mother doesn't give two hoots about me or mine....I only have my partner of 4. Years and my children who are 5 and 8. I have a few good friends but they have enough to deal with in their lives. I just feel very poorly and noone to vent to

  • That's when coming on here helps, it's just unfortunate the written word can be misunderstood & I write as I think & then can't correct myself as reactions aren't seen as we write if that makes sense?!

    I'm fortunate as my husband has been with me every step of the way & fully understands it all. I'm so sorry you have problems with your mum but hopefully your partner will in time understand & be your rock. Having two youngsters will be both a blessing & damned hard work but your 8 year old sounds a good un!!

  • Thanks hun. Means alot :)

  • Definitely take photos of swelling and a pain diary with info about pain, fatigue and any painkillers which you have taken. Sods law that you will be having a good day when you go so the above will reinforce what you have been going through.

  • Hi there I do feel very sorry for you, if only you had the support and care from your family you would cope better, a little understanding goes a long way. thinking of you and take care, go to A&E if necessary.

  • Hi there.... So feeling it with you.... I was like that mid March. I couldn't believe how quickly the pain and I flamed joints came. Lack of sleep and the fact that nothing seemed to touch it at times. I had my appt Monday last week. They gave me a steroid jab, and I started mtx and hydroxychloroquine on the Tues. the steroid worked quickly and took the sharp continual pains away by the next day, just letting the aches get duller day by day. I was also told that while the meds get into my system over the next few months if I need they will give me monthly steroid jabs. my girls who are 9 and 11 have been troopers. Roll on apps for you....

  • I hope they give me something Tues. My shoulder feels like it keeps moving out of joint

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